Due to a rare, genetic neurological condition called lissencephaly, 6-year-old Lucas Aldrich is unable to walk, talk or feed himself. Despite that, the Idaho boy recently completed his first triathlon, with a little help from his big brother Noah.

Earlier this year Noah, 8, saw a video of two brothers competing together in a triathlon and immediately decided that he and Lucas could do the same thing. The boys trained for three months. Come race day, they had the crowd in Boise cheering as Noah, who not long ago couldn’t swim at all, pulled Lucas in a raft for 200 meters, then cycled under the hot summer sun with his brother riding along in a buggy behind him, then pushed him in a stroller-like contraption for the final mile-long run.

By the time they reached the finish line, the brothers were flushed, exhausted and absolutely thrilled. Their parents Alissa and Brian, the loudest of their many supporters, were beyond proud of their two boys.

Alissa tells BabyCenter that while the brothers “have been best friends since Lucas was born,” sharing such an incredible experience only strengthened their relationship.

“It has… made their already incredible close bond closer. I believe Lucas is becoming more aware and knows that he is part of something incredible that most kids like him never get to participate in,” she says. “The character this has built in Noah is beyond words. I’m also so proud the effect it has had on people all over the world. We’ve gotten messages from Australia, Spain, Denmark, Poland, UK, Mexico, etc…. I’m so proud of the message of love, acceptance, living life without limits, and looking at the possibilities and abilities, not disabilities. Just because a child has a life-limiting illness doesn’t mean that they have to sit on the sidelines.”

Looking through photos from the event, the boys’ bond is hard to miss. Noah sums it up pretty perfectly, saying of his little brother, “I like everything about him, he’s perfect.”

After a normal pregnancy and birth, Lucas’ lissencephaly diagnosis came as a shock to the Aldriches: “We had no idea that anything was the matter,” Alissa recalls. “After three months, he started crying incessantly. We thought he had colic…. [The diagnosis] was devastating news at first. We just did not know what to expect for this beautiful boy we absolutely loved. We decided to make the most of his life for whatever its span, and of our own lives with him.”

They’ve done just that over the past six years, and that determination to make the most of every day is what led, in part, to the family’s next goal: Lucas House .

Inspired by the UK’s Helen House, Alissa is working to build a similar children’s hospice in Boise.

“Lucas House will be a place where children with life-limiting conditions and their family can come and receive respite (relief), and as needed, end of life care. This model of care is not prevalent in the US, with only a few houses actually up and running,” she tells us. “One of the focuses of the house will be respite care or short-term care that helps a family take a break from the daily routine and stress of home care. It will also incorporate pediatric palliative or comfort care. The house will be a haven of fun for children to receive wonderful services such as pet therapy, music therapy, aquatic therapy, art and sensory therapy, among others. The focus will be to support the whole family through the journey of a child’s life-limiting diagnosis to end of life. The house will offer other services such as social work, sibling services, bereavement and chaplain services. The goal of the house will be about LIVING and making the most of life, no matter the circumstances.”

As the story of Lucas and Noah’s inspiring race makes its way around the world, these dreams for Lucas House are inching ever closer to becoming a reality: “It is incredible to see how far the story of two small boys has reached and the impact it has had on the world,” says Alissa.

As for the brothers, they’ve been keeping busy these days, too: They completed their second triathlon together a couple of weeks ago.

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